Sandra Jensen

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Sandra Jensen was born with Down syndrome and a defective heart, which often go hand in hand. Although it was difficult, she was still able to live on her own and provide for herself. However, at the age of 34, Jensen's heart and lungs were compromised, and her doctor came to the conclusion that she would need a heart-lung transplant to survive.^[1]

She applied to transplant programs, but was told that they did not perform the heart–lung transplants on people with Down syndrome. In fact, no American patient with Down syndrome had ever undergone the procedure. This procedure is rare for anyone because it is extremely difficult to secure both a heart and lungs simultaneously, and only about 100 procedures a year occur. Dozens of would-be recipients each year die waiting, but Jensen's case was different because she was denied based on her disability.

To Ms. Jensen, who had worked as an advocate for the rights of people with disabilities, this was unacceptable. Together with many supporters, she began a very public battle. She gained nationwide attention, arguing that Down syndrome should not automatically deprive a patient of his or her chance to survive.^[2] The journey to receive her transplant was hard fought, but after extensive amounts of work, they won. On January 23, 1996, Sandra Jensen received the requested transplant at Stanford University Medical Center, and was released on March 1.

Her case was seen by many as a test of whether hospitals could use blanket categories to deny special treatments. The hospitals argued that mental limitations of Down syndrome could affect a patient's ability to follow a demanding post-operative regime; mistakes can mean death. Doctors decided organs in short supply would do more good if they were given to others. "The whole time we were fighting with the medical establishment, all we were asking was that they look at Sandra as an individual," said Sandra's mother. Unlike many people with Down syndrome, Ms. Jensen had lived on her own for years and had held various part-time or volunteer jobs. In Ms. Jensen's activism was a constant reminder to hospitals that under the Americans with Disabilities Act, an institution can lose all its federal funding if it is shown to have discriminated against people with disabilities.

Sandra Jensen died on 9 May 1997, 16 months after her heart-lung operation^[3] due to a type of cancer frequently associated with transplantation.^[4] It should be known that, according to the November 2, 2011, issue of the Journal of the American Medical Association (JAMA), there are currently 32 different types of cancers that are associated with transplantation.^[5] Although Ms. Jensen's transplant was ultimately the cause of her death, she was still able to fight for many disabled people and save many lives.

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